Taking Midodrine As Needed Now...

[Becia]

"Let's just make your midodrine as needed". It was music to my ears, because the last doctor I talked about reducing the midodrine because it seems like sometimes it's hurting something else, promptly told me I was crazy, and how dare I ever think I will be with this medication for the rest of my life.

I'm in the midst of another long term in patient stay at a physical therapy center, trying to regain my energy and trying some new stuff, after about two months of not being able to safely function at home on my own. One thing led to another, and bam. Also just had some more oral surgery, so I've been kicked enough, and I'm still kicking back, but having to be kind to my body, and allow people to help me. This stay is so different than my last one (different facility for one, different therapists, and a new diagnosis of my EDS), and the results are amazing really.

Anyways, today I had to meet up with my local cardiologist (I have two, local dude and then an EP specialist at Ohio State, about two hours away) to go over my midodrine, florinef and little things he's watching here. He's still a bit frustrated I do not have a pacemaker yet, he thinks I'm a prime candidate for a certain one, but it's all on the EP doctor. With having the PICC line in place, I can not have the pacer placed, because of risk of infection, and my saline infusions have been really beneficial for me, so I'm hesitant in getting rid of that, or I will be dealing with a lot more er and hospital stays if I remain hypovolemic.

While I've been in the rehab, my doctor here is the same from my previous stay, and we were looking through my records, and watching my BP. I am hyper-pots for the most part, do have a few hypo drop outs as well (and when they happen, they are gnarly bad). For me, the midodrine helps raise that when it drops, but it also is helping the veins in my legs constrict more, so the blood is pushed more to my brain. So, if I'm going to be going out, spending anytime with my feet down, possibly standing/walking (I also am Ehlers Danlos, type hyper mobility, and my extremities are extremely fragile and lose, so I use a wheelchair, but can on occasion make a short 10 foot walk if need be, with my walker, etc), I like to take a dose and keep it in my system to help minimize my syncope (which even when it's there in me, I still pass out, but it's not nearly as often as without).

Well, the last few days, my body has really thrown itself into a hyper crisis (178/145 last reading, heart rate 144) and my doctor here changed how we did the midodrine, by using parameters. If it's below 135/85, we take a dose, which has been in the morning for certain. If above, we stop, because even though it will start to dip some with going to therapy class with my feet down, I'm moving more, I've got compression wear in action, and I'm also wearing some pretty strong braces on my legs, and that helps further the flow back up. Again, midodrine has never taken my pre syncope away, and while I'm sometimes nervous about not taking it, and then going to therapy, I have a dose right down the hall, the therapists all work with me and we monitor all that's going on. The brand I'm on seems to kick in within about 20 minutes, which is perfect because depending on what I did, I need to rest, and that's perfect.

I'm really excited my cardiologist agrees with this action, and is wanting me to continue it when I get home. I monitor at home like mad anyways, and with my EDS issues sometimes, I need to lay down and get off my hips. Can't do that with a dose of mido in me...and now I don't feel bad needing to skip a dose, if it helps something else. I suspect i will still be taking at least two of the 10mg doses a day.

I asked if he ever foresaw me coming off of the florinef or the midodrine, and he honestly does. He's also going to push my EP cardio to try me on the Ivabradine too, if we decide I do not qualify for the special pacer he knew of (monitors breathing, and then lowers heart rate to match that). i honestly don't see how sometimes, but it is nice that he has that hope, and trusts me enough to do the midodrine as needed, so my body isn't throwing itself into an overdrive all the time. Even if it's still twice a day I need it, one less pill to choke on is one less pill.

Not much to really report on my case, I've kinda just thrown myself more into the "this is how I have to deal, these are my diagnosis, what can I do to manage my life" More than research. I get confused and stressed more with research. I just did my first new medication trial in a year (sadly, it failed and made a few things worse), so I'm definitely back to no more. I may try the Ivabradine, because I'm hearing great things from some on it, but so far, my doctors are leery. I'm learning so many of my other issue are tied back to my EDS, learning my mom may have had it, and it's shaping everything, from my cardiac care, my neurology, physical being... It's amazing how it's tying and making sense. But now, I gotta live.

Hope to be home in a week or two. They are securing someone to come in and help me with chores, shopping, etc., so that is a welcome addition to my life. Lots of education on POTS and EDS happening with my nurses and therapists, but I think it's gonna benefit the future. While I wish I was home, I miss my fish, I'm content with being at the rehab facility, because for the first time in a long time, I feel like I'm getting a bit healthier than I have been, and I have the safety precautions I need.

[Katybug]

Hope you're well enough to get home soon.

[corina]

You are def making progress Becia in learning to live with all this and working around your condition. Sending good thoughts your way and hope you'll be home real soon!

[angelloz]

Hoping things go slow and steady and you get home soon.